Emma B
Emma’s 11-year-old daughter, Freya, caught Covid in October 2021. She had a range of symptoms and still experiences severe fatigue, headache, and backache. For Emma the experience has been scary, but healthcare providers have been kind overall. Emma said that the support from an online community of parents with similar experiences is vital for maintaining her own mental health. Emma was interviewed in April 2022.
Emma lives with her partner and two daughters and works in the education sector. Ethnicity: White British.
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Emma lives with her partner and two daughters and works in the education sector. Her 11-year-old daughter Freya caught covid in October 2021 and developed long Covid. Emma was quite scared by her daughter’s initial breathing difficulties, cough, and temperature fluctuations. Freya was fatigued, had a headache and back pain. The symptoms didn’t get better, and she also developed rashes, skin peeling from her hands, aching muscles, sore legs, and insomnia.
Emma’s life has changed a lot as a result of her daughter having Long Covid. Emma used to be very organised but now takes things a day at a time to accommodate how Freya feels. Her daughter is in school part-time, so Emma is constantly juggling childcare and work. The school have been really supportive, and Freya is getting a robot so she can participate in classes virtually and join her friends at break times on days she doesn’t go in. Freya’s friends have also kept in touch well via Facetime, even though she often misses out on things when she is not with them. When her daughter’s health improves during the school holidays, it can be disheartening to see her hugely fatigued again when school restarts. Emma stopped going out with friends for a long time as she felt guilty about leaving her daughter at home. She had some time off work to care for Freya and because she was exhausted too. The family now go out together less and tend to use spare money on treatment or travelling to appointments. Her older daughter has shown concern for her younger sister and taught her to crochet so that she had something to do when she felt up to it.
Emma finds it hard to hear her daughter recognising that she can’t manage the activities she used to love, even though Freya is generally very resilient. She feels like Freya has lost some of the opportunities of her childhood. Emma accesses peer support online and has encouraged Freya to do the same to help with her emotional wellbeing. Emma finds this helpful for when others don’t really understand what she’s experiencing or are judgemental about how her daughter uses her limited energy.
With her daughter having so many symptoms, Emma found it hard to know who to go to for help, and what symptoms to prioritise. After doing some online research, Emma went to the GP and Freya was referred to a paediatrician and a physiotherapist, and then to a Long Covid clinic and a fatigue specialist. The fatigue specialist diagnosed Long Covid and chronic fatigue syndrome/myalgic encephalomyelitis. They supported Emma’s daughter with advice for pacing activities and wrote to the school for a reduced timetable. They waited a long time to attend a Long Covid clinic. It was disappointing for Emma that they weren’t able to conduct further tests or investigations, as she has heard this is happening in other parts of the country. The medication her daughter was prescribed to help with insomnia has made a big difference. She was also prescribed some painkillers and medication to protect her stomach but stopped those and only takes over the counter vitamin D and antihistamines. Emma doesn’t think these are helping.
Emma would like more research into Paediatric Multisystem Inflammatory Syndrome. She would advise other parents to look into peer support groups and to persist with seeking help from healthcare professionals. She also thinks it would be helpful to have national consistency in what is available through Long Covid clinics, with a more holistic approach that doesn’t overemphasise psychological causes.
Emma B said she was initially in denial about her daughter Freya’s ongoing symptoms.
Emma B said she was initially in denial about her daughter Freya’s ongoing symptoms.
She just kept feeling tired and from the day she got Covid she had really bad headache and her back was hurting really bad as well and that never went away so she still had a continuous headache and the severe back pains. And basically, her symptoms just kept going on and then more and more symptoms, new symptoms kept popping up, such as rashes and the fatigue stayed, aching, aching muscles her legs and that hurt, her legs hurting. From the moment she got Covid she had really bad insomnia and just couldn’t sleep at all one night we was up and she was just getting beside herself and crying until half past four in the morning.
So that was quite challenging just really struggling to sleep and the more tired she was the harder it was to get to sleep. That continued for months until we got some medication to help her sleep.
When did you think ‘I think this probably is what she’s got’?
Probably as time continued and went to see the physiotherapist and he said it’s more a fatigue issue probably just seeing Freya every day struggling just getting worse and deteriorating and the less sleep she got the worse she got and probably, I probably knew but you don’t want to admit it to yourself, you’re in a bit of denial as such probably knew by November really if I’m honest with myself or had some idea in my mind that that’s what it was
Freya’s week was filled with sports activities after school and at weekends. Since having Long Covid she can only manage two hours at school three days a week.
Freya’s week was filled with sports activities after school and at weekends. Since having Long Covid she can only manage two hours at school three days a week.
So pre-Covid Freya was just a bubble of energy is probably the best way to describe her I’ve never met a child as fit and active as her, she just wanted to be involved in absolutely everything. Like I mentioned she was the captain at football, very confident as you can imagine to be captain you’ve got to have a bit of shout about you, quite feisty [laughs] but determined running up and down that pitch from, you know, to goal position to get back into defence and telling the rest of the team to do so. And so, a typical Saturday would be go to a football match, come home have a bit of dinner and then she’d go straight to company dancing for a few hours, sometimes even, you know, if they need to practice on a night so a full day of activities
Dancing mid-week, football practice mid-week full time school, come home from school and go out in the garden and kick the ball about, just non-stop energy, a bundle of energy pre-Covid. And at the minute she’s currently doing three days a week at school 10-12 that’s, that’s all she can really manage, she’s been still trying she’s, football it would absolutely break her heart if she didn’t see her team and the members, so she tries to go along to the matches some Saturdays and maybe subs for five/ten minutes but it’s such a struggle and she’s exhausted after. She, she’s never made training on a Monday because school she has Monday and by then she’s, if she’s done two hours at school there’s no way she could manage training.
Emma B uses the money she would usually spend on family activities to pay for therapies which she hoped would improve her daughter’s Long Covid symptoms.
Emma B uses the money she would usually spend on family activities to pay for therapies which she hoped would improve her daughter’s Long Covid symptoms.
Yeah so, it’s just full of change really, we’ve gone from, it’s changed in a lot of ways so financially like obviously before we was going out a lot more, we’d go out for tea as a family and enjoy company that way now we use spare money to pay for like reflexology or some complimentary therapy for Freya, a lot more financial visits to hospital even our local hospitals like over 20 miles away. The Long Covid clinic we went to was like over 40 miles away so just you, you know, financially it’s different.
Emma B’s daughter Freya would go to school for a day then crash for the following two days and not be able to get out of bed. Emma described this like being on a roller coaster and a challenge to manage.
Emma B’s daughter Freya would go to school for a day then crash for the following two days and not be able to get out of bed. Emma described this like being on a roller coaster and a challenge to manage.
I think we’re at a stage now where we’re managing but what we was, it was mainly school before, so what would happen was Freya would struggle, do a day and then she’d be in bed for two days, she’d crash she couldn’t get out of bed, she had pins and needles in her leg every time she stood up she felt dizzy, nausea feeling sick so we was like on a roller coaster of her managing her day, two days in bed then she’d push herself and go for a day back in bed for two days. So that was really challenging because then I was like now I’ve got my childcare in order a little bit but then it was like ringing my dad at seven in the Monday morning waking him up, can you have Freya today and taking her down there before work getting to work , so that was a big challenge and luckily we’re over those things now because the specialist wrote to the school and of course we’re on more of a, a plan.
Emma B’s daughter Freya has Long Covid. She says her other daughter worries about Freya and is very supportive, but it’s caused a bit of resentment at times.
Emma B’s daughter Freya has Long Covid. She says her other daughter worries about Freya and is very supportive, but it’s caused a bit of resentment at times.
It’s just, it’s just things like that really and there is, there’s her sister as well it’s impacted her sister because obviously her sister worries about her it was very hard when she had Covid because she wanted that emotional support, you know, 16 year old wants to be near her mum and she had to sort of stay in her room and she resented Freya a little bit, just for a moment, natural feelings. But, you know, little sibling arguments and rivalry but and then the rest of the time she’s over, she over compensates like she, she taught her sister taught herself how to like crochet and sat with Freya and taught her to do that so Freya had something to do when she felt up to it at home so I think she takes a lot of responsibility and worries about her sister.
Emma B joined a support group for parents and had linked up her daughter with another for children of similar age.
Emma B joined a support group for parents and had linked up her daughter with another for children of similar age.
So they’re evolving and they’re setting up new things constantly but just looking, so you can search other people’s symptoms, similar experiences on the support group, you can talk to other parents so you know you’re not alone, some people just have a bit of a rant which is fine and then there’s the separate one which is the Long Covid Kids Facebook group which gives like any publications and the post-publications and things like that and then on the website you’ve got, you can like log in and register and they’ve got support packs and information, links and they’ve also set up like a chat group for the children now so the children can go into a chat box, so they can find other children to talk to and there’s also a certain number of Long Covid Kids connection sessions the children can join Zooms and chat with other children in similar situations. Luckily one of the mums just set up said does anybody want to meet, anyone want to talk I’ve got an 11-year-old and there’s five of us and we’ve all got children who are 11 so we’ve got us own WhatsApp group for Long Covid Kids and it’s just really good to have that support around you.
It really helps that she met up with her a girl who’s the same age just online, but I spoke to her mum, and we had a Zoom and they…we met the girls up just who I met through Long Covid Kids, so she’s got someone in a similar situation and that’s really helped her I think.
Emma B said she looked at everything she could find about Long Covid, trying to work out what would be helpful to her daughter.
Emma B said she looked at everything she could find about Long Covid, trying to work out what would be helpful to her daughter.
Everything [laughs]. I read, I just read absolutely everything that there is out there, obviously proper medical, trials, clinical trials, Reuters, World Health, anything I can find and any articles, people sharing on Long Covid support group read all those anything I can find online, I just read and read and read them all and just try and find answers really. anything I can do, you know, just like reading supplements that have helped people.
Yeah 100% without that I think I could have probably, you know, my mental health would have really suffered, there’s…thank goodness for the Long Covid Kids and they’ve brought out a fantastic over 100-page guide as well and you can share with schools and settings as well so that’s really, definitely helpful.
Emma B was expecting more help from the clinicians, who questioned whether Freya’s physical symptoms were ‘learned behaviours.’
Emma B was expecting more help from the clinicians, who questioned whether Freya’s physical symptoms were ‘learned behaviours.’
So the Long Covid clinic we visited after me chasing it up and up and up lots of times and there was a psychologist, a consultant, and an occupational health physiotherapist, I felt the emphasis was very much on mental health and basically they said that we’re an assessment centre and you’ve already got a diagnosis so there’s nothing they can do, just we got some basic help and support on pacing and things and the physio, you know. There was nice people and everything but there was just no, I expected a bit of a miracle that they’d help and do some more tests or do some, you know, just help a bit more. And there was just, there was just nothing. We, I mean me and Freya was separated in a room and we had to answer questionnaires about like, ‘Do you steal, do you…’ It was very psychological based, ‘Do you hit other children, do you have anxiety…’ and I just think there was very much going down a lot of the anxiety route. They asked if everyone in the family was well and I just said yeah everybody’s fine, but my husband has a spinal fusion but this was like, he’s had a bad back for nine years and they sort of like questioned whether it could be because Freya’s bad back is like learnt behaviour from seeing her dad but I explained that she’s never complained of a back pain since, until she was, you know, 11 years old and pre-Covid she wouldn’t want to be like this, pre-Covid Freya was the fittest, healthiest active child I know. She’s, you know, a distinction grade dancer, she was in theatre productions, captain at her football team, you know, there’s no way she’d want to not be able to do the things she’s passionate about and loves. So, I just felt like, you know, it was a bit of a kick in the teeth really because I was really looking forward to getting some help and answers.